So, as the final word (“home”) of my previous post made clear, I’m now, well, home, and have been for eight days, if my counting skills aren’t betraying me—a very real possibility. And don’t get me wrong: it’s great. Sleeping in my own bed after an additional three weeks of a hospital-bed-mattress slumber is an incredible feeling; I can now eat whatever I want (well, within reason) and use my favourite household device, the microwave, mostly to melt cheese onto my pitas; nobody interrupts whatever I’m doing to check my vital signs. In other words, I’ve got a near-utopia situation going on here.
You probably noticed the “near” preceding that “utopia” before the giant pita pic. You have to give me a break here: when one’s existence is characterized mainly by sleeping and microwaving, it’s not unreasonable to expect a catch or two.
My main one, at this point in time, is the list that the occupational therapist at the hospital put together for me to follow upon discharge. It consists of reasonable, pragmatic, safety-related guidelines—for example, I’m not supposed to go anywhere alone since I still have episodes of confusion, and I’m supposed to have someone nearby at all times. But even though I’m completely aware of how necessary this protocol is at this particular chapter in the Story of My Brain, I’m finding it a little difficult not to push back against it, especially since my independence is something I’ve tried to cling to over the course of my years with epilepsy.
The thing is, I’m lucky in so many ways, and while my instinct is to complain about how rough my incredibly privileged life is, I think I better take a moment to acknowledge concrete ways in which it’s awesome, specifically regarding what’s happening right now. A few examples: first, my husband works from home, meaning that we didn’t need to make arrangements for daytime care—otherwise known as “daycare”—in this interval between the hospital and outpatient brain rehab. Second, we have great friends who have flexible schedules and are supportive and are willing to come to us and/or pick me up and take me to a coffee shop that’s a block or so away while my husband works or while he runs errands or goes to appointments, meaning that I’m not always sitting by myself in the living room while he’s in his office and that he can get stuff done without leaving me at home without someone else here. Third, we continue to have great family support. We’re super grateful to have loved ones, like my sister-in-law, who’s going to visit at the end of the month, who’ve made our 2017 much easier than it would’ve been otherwise.
Back to whining for a bit.
If I stop too long to think about it, things seem pretty gosh-darned hard right now. Being mostly confined to our apartment is hard. Being in a situation that’s not my physical and cognitive ideal is hard. Feeling like I’m doing “nothing” with my life is hard. Needing twelve or thirteen or fourteen hours of sleep a night because doing “nothing” is so exhausting is hard. But hey: things are much, much easier now than they were a few short weeks ago, and I trust that they’ll continue to improve. As they do, I’m (very slowly) learning that baby steps are OK.
As long as they’re really, really big baby steps. (Kidding?)